Lisa Higgs' Story
In February 2005 I started to get short sharp twinges down the left side of my face, mainly in my
upper and lower back teeth. Gradually the pain got worse, especially when chewing my food,
speaking for too long or if something touched my face. At first I thought it might be sensitive teeth as I
couldn’t drink cold drinks, but as the attacks seem to be triggered when I talked, I realised it might be
something else. I went to see my GP and he suspected I had Trigeminal Neuralgia. My two sons,
then aged 4 and 11 months, had just had chickenpox and he thought I might have had shingles on the
trigeminal nerve. He prescribed an anti-shingles drug, Tramadol (pain relief) and referred me to a
neurologist.
My neurologist appointment came through within a week or so as at the time I could be seen privately
through my husband's health insurance. The neurologist sent me for an MRI and CAT scan
straightaway. He confirmed TN and prescribed carbamazepine (Tegretol) - a relatively low dose to
start with so I could get used to the drugs. I went along fairly steadily for about six months with the
carbamazepine keeping the attacks at bay and not having any side-effects. My husband and I had
just set up our own Property Management Company and the stress of running our own business and
having two young boys was telling, and with this increased stress my TN got worse. The attacks
started to prevent me answering the phone or dealing with clients and the strain on my relationship
with my husband resulted in us splitting up at the end of 2005.
I experienced a personality shift, from being someone generally sunny and outgoing to someone
sullen and quiet for fear of bringing on an attack. I went back to see my neurologist and he increased
my carbamazepine dose. The side-effects were awful now, my speech had become very slurred and
I was lethargic and clumsy all the time as well as having blurred vision, double vision, and gaining
weight. I couldn't work or drive, it was impossible to communicate and I became increasingly nervous
of having to interact with people I didn't know and who didn't know I had TN. I started to stay in more
and more. I went back to my neurologist several times within a few months and he kept adding in
new drugs along with my carbamazepine, and soon I was mixing phenytoin, amitriptyline and
gabapentin in with it. The pains were getting worse and worse, and my drugs were still being
increased.
The shock-like pains went from sharp twinges to a volley of shocks - at its worst up to 50 shocks, one
after the other in the course of an attack, lasting minutes. The pain was so severe in each attack that
it would take my breath away and leave me completely drained. The attacks prevented me from
doing so many things. I couldn't chew my food, or drink hot or cold drinks - everything had to be
lukewarm. I couldn't wash my face or put on any make-up. I couldn't brush my teeth and even just
swirling mouthwash around my mouth would set off an attack. For nearly three years I wiped only the
right side of my teeth with a soft bristle brush and would mix mouthwash and warm water to splash
into the left side of my mouth. I couldn't wear my hair down because when it brushed my face that
would set off an attack. I couldn't go outside in cold or windy weather or take my children outside to
play. I couldn't talk, and I would walk around with a pen and paper so that I could communicate with
people. I couldn't use the phone at all. I had a code with my parents that I would call and put the
phone down if I needed them to come over. I would use text and email as much as possible. It was
around this time that I subscribed to the TNA, which meant more information became available to me,
together with details of local support groups. As there wasn't one in my area, Jillie Abbott from TNA
UK came to Swindon to visit me and discuss the possibility of setting up a support group in Wiltshire.
Jillie gave me lots of information and the title of two wonderful books that became my TN bibles Striking Back and Insights.
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My new partner and I found out we were expecting a child in May 2006 and I was instantly taken off
everything except carbamazepine. I was put on a huge dose of folic acid and monitored every couple
of weeks. Within about eight weeks of being pregnant my TN disappeared as quickly as it had
originally arrived and I remained pain-free for the duration of my pregnancy. Just three weeks after I
had stopped breastfeeding, the TN attacks came back worse than ever. I guess this happening so
soon after I had had a baby didn't help with my mental state, and I sank into a huge depression and
was put on anti-depressants.
I couldn't get in to see my neurologist quickly as I was now in the NHS system and appointments took
longer to arrange. It wasn't long after this that Jillie Abbott from TNA called to see how I was doing.
She suggested that I would benefit from seeing Prof Joanna Zakrzewska, TNA UK's Medical Advisor
and that I ask my GP for a referral. At our first meeting, Prof Zakrzewska took me off everything
except carbamazepine which she reduced as a new drug, oxcarbazepine, was slowly introduced.
After a long discussion about the pain and the triggers, Prof Zakrzewska said that I had classic TN
and that I would be a good candidate for an MVD operation, should I want to go down the surgery
route. I dismissed it as not for me, as long as the drugs controlled the pain and kept me relatively free
of side-effects. The transition from one drug to another was hard and I can remember feeling so
nervous of reducing the drugs I was on - even though I felt terrible, they were like a safety blanket that
I couldn't let go of, for fear of the attacks getting worse.
Eventually, I ended up on only oxcarbazepine and the attacks started to get less and less. I was
never pain-free and I still stopped myself doing lots of things that I knew were pain triggers. My vision
was still blurry and my depression was still deep-rooted but I did feel better than I had in a long time although the fear was still there regarding the attacks. Unfortunately, it wasn't too long before my
dose of oxcarbazepine was slowly increased, as the attacks became stronger. At its highest, I was on
a daily dose of 3600mgs. That is when I hit a wall; enough was enough. I called Prof Zakrzewska's
office and asked her to put me forward for an MVD.
Prof Zakrzewska introduced me to Mr Neil Kitchen to talk about the MVD operation. We spoke at
length and I eventually decided to put my name down on the waiting list for surgery in March 2009. I
th
went and had my pre-op in May and on 6 August I was in hospital ready for the big day. I was
terrified about having it done but I wanted to have some quality of life back. I went down to theatre
pretty much first thing and then the next thing I was aware of was lying in bed with a big bandage on
my head, and I vaguely remember Mr Kitchen peering over me and telling me that the procedure had
gone well and that I was in recovery. I felt tired and drained but surprisingly okay. No pain and no
TN! I could not believe it! I stayed in hospital for a week and while in there my oxcarbazepine dose
was halved and I was told to continue lowering it by 300mg a fortnight. The recovery time from the
MVD was hard - it took me about four months to get over the operation. My drugs were going down
slowly and I had no attacks.
It wasn’t all plain sailing. I was treated for an infection and needed antibiotics for a time in September,
and at the beginning of October 2009 I started to get TN pain again quite badly. I was so
disappointed, and again I took a dip emotionally and started to increase my oxcarbazepine again,
which was very disheartening. I also have a large lump on the side of my head, which I am told is a
CSF leak that should go away on its own. The good news is that since then I have been pain-free for
four months and have managed to reduce my drug dosage to 600mg a day. Along with this, I have
reduced my antidepressants and I have lost over a stone in weight. My mood is light-hearted and funloving again. I go out as much as I can, and my partner and I have a normal life together with our
children. I have started to re-train and hope to be working for myself again by the end of this year.
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I now have a life.
If I hadn't found TNA UK I would still be in the turmoil of the pain and drugs cycle I was in for all those
years previously. They gave me information in a format that I understood and could digest; they gave
me support throughout the condition; they gave me unconditional friendship and empathy, and most
of all they gave me hope. This Association is invaluable to all those people living with the fear and
reality of TN. And while I don't have the courage to say I am cured, I know, no matter what, I can get
in touch with TNA UK and not feel alone. Hopefully, I can give something back too by helping others
who have joined.
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